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Gepubliceerd in: Quality of Life Research 4/2012

01-05-2012

Use of the PedsQL in childhood intermittent exotropia: estimates of feasibility, internal consistency reliability and parent–child agreement

Auteurs: Deborah Buck, Michael P. Clarke, Christine Powell, Peter Tiffin, Robert F. Drewett

Gepubliceerd in: Quality of Life Research | Uitgave 4/2012

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Abstract

Purpose

To evaluate the PedsQLs performance in children with intermittent exotropia (X[T]) in terms of feasibility, internal consistency, floor–ceiling effects and levels of parent–child agreement.

Methods

Children with X(T) aged <12 years were recruited from 26 UK Hospital Eye Clinics/Orthoptic Departments. QOL was assessed using child (n = 166) and proxy (n = 392) versions of the PedsQLv4. Feasibility was assessed by percentage of missing responses; internal consistency by Cronbach’s alpha and agreement by Bland–Altman plots and intraclass correlations. Analyses included age and gender comparisons.

Results

Missing response rates were no higher than 1.8%. Cronbach’s alpha reached ≥0.70 on all but one parent-rated scale and on most child-rated Total, Psychosocial Summary and Social Functioning scales, but was <0.70 on most child-rated Physical, Emotional and School Functioning scales. On parent-rated scales, there were no floor effects; ceiling effects reached 27–56% in parents’ Physical, Social and School Functioning. On child-rated scales, there were 0–1% floor effects and 0–28% ceiling effects. Parent–child agreement was fair to poor and varied by child’s gender.

Conclusions

Proxy-rated PedsQLs demonstrated good internal consistency/feasibility in parents of children with X(T); child-rated reports appeared acceptable, although caution is advised regarding Physical, Emotional and School Functioning scales in younger children. Low–fair agreement between proxy and self-ratings is common in paediatric QOL assessment, reiterating the importance of obtaining both perspectives. We encourage future studies to explore the influence of child’s age and gender, and the relationship of the proxy respondent.
Literatuur
1.
go back to reference Buck, D., Powell, C., Cumberland, P., Davis, H., Dawson, E., Rahi, J., et al. (2009). Presenting features and early management of childhood intermittent exotropia in the UK: Inception cohort study. British Journal of Ophthalmology, 93(12), 1620–1624.PubMedCrossRef Buck, D., Powell, C., Cumberland, P., Davis, H., Dawson, E., Rahi, J., et al. (2009). Presenting features and early management of childhood intermittent exotropia in the UK: Inception cohort study. British Journal of Ophthalmology, 93(12), 1620–1624.PubMedCrossRef
2.
go back to reference Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.CrossRef Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.CrossRef
3.
go back to reference Upton, P., Eiser, C., Cheung, I., Hutchings, H. A., Jenney, M., et al. (2005). Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes, 3, 22.CrossRef Upton, P., Eiser, C., Cheung, I., Hutchings, H. A., Jenney, M., et al. (2005). Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes, 3, 22.CrossRef
4.
go back to reference Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). How young can children reliably and validly self-report their health-related quality of life? An analysis of 8, 591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 1.CrossRef Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). How young can children reliably and validly self-report their health-related quality of life? An analysis of 8, 591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 1.CrossRef
5.
go back to reference Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3(6), 329–341.PubMedCrossRef Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3(6), 329–341.PubMedCrossRef
6.
go back to reference Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 43.CrossRef Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 43.CrossRef
7.
go back to reference Cremeens, J., Eiser, C., & Blades, M. (2006). Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes, 4, 58.CrossRef Cremeens, J., Eiser, C., & Blades, M. (2006). Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes, 4, 58.CrossRef
8.
go back to reference Uzark, K., Jones, K., Burwinkle, T. M., & Varni, J. W. (2003). The Pediatric Quality of Life Inventory in children with heart disease. Progress in Pediatric Cardiology, 18, 141–148.CrossRef Uzark, K., Jones, K., Burwinkle, T. M., & Varni, J. W. (2003). The Pediatric Quality of Life Inventory in children with heart disease. Progress in Pediatric Cardiology, 18, 141–148.CrossRef
9.
go back to reference Iannaccone, S. T., Hynan, L. S., Morton, A., Buchanan, R., Limbers, C. A., & Varni, J. W. (2009). The PedsQL in pediatric patients with Spinal Muscular Atrophy: Feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Neuromuscular Module. Neuromuscular Disorders, 19(12), 805–812.PubMedCrossRef Iannaccone, S. T., Hynan, L. S., Morton, A., Buchanan, R., Limbers, C. A., & Varni, J. W. (2009). The PedsQL in pediatric patients with Spinal Muscular Atrophy: Feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Neuromuscular Module. Neuromuscular Disorders, 19(12), 805–812.PubMedCrossRef
10.
go back to reference Panepinto, J. A., Pajewski, N. M., Foerster, L. M., & Hoffmann, R. G. (2008). The performance of the PedsQL generic core scales in children with sickle cell disease. Journal of Pediatric Hematology/oncology, 30(9), 666–673.PubMedCrossRef Panepinto, J. A., Pajewski, N. M., Foerster, L. M., & Hoffmann, R. G. (2008). The performance of the PedsQL generic core scales in children with sickle cell disease. Journal of Pediatric Hematology/oncology, 30(9), 666–673.PubMedCrossRef
11.
go back to reference Goldstein, S. L., Graham, N., Warady, B. A., Seikaly, M., McDonald, R., Burwinkle, T. M., et al. (2008). Measuring health-related quality of life in children with ESRD: Performance of the generic and ESRD-specific instrument of the Pediatric Quality of Life Inventory (PedsQL). American Journal of Kidney Diseases, 51(2), 285–297.PubMedCrossRef Goldstein, S. L., Graham, N., Warady, B. A., Seikaly, M., McDonald, R., Burwinkle, T. M., et al. (2008). Measuring health-related quality of life in children with ESRD: Performance of the generic and ESRD-specific instrument of the Pediatric Quality of Life Inventory (PedsQL). American Journal of Kidney Diseases, 51(2), 285–297.PubMedCrossRef
12.
go back to reference Chak, M., Rahi, J. S., & British Congenital Cataract Interest Group. (2007). The health-related quality of life of children with congenital cataract: Findings of the British Congenital Cataract Study. British Journal of Ophthalmology, 91(7), 922–926.PubMedCrossRef Chak, M., Rahi, J. S., & British Congenital Cataract Interest Group. (2007). The health-related quality of life of children with congenital cataract: Findings of the British Congenital Cataract Study. British Journal of Ophthalmology, 91(7), 922–926.PubMedCrossRef
13.
go back to reference Xu, T., Wu, Z., Yan, Z., Rou, K., & Duan, S. (2010). Measuring health-related quality of life in children living in HIV/AIDS-affected families in rural areas in Yunnan, China: Preliminary reliability and validity of the Chinese version of PedsQL 4.0 generic core scales. Journal of Acquired Immune Deficiency Syndromes, 53(Suppl 1), S111–S115.PubMed Xu, T., Wu, Z., Yan, Z., Rou, K., & Duan, S. (2010). Measuring health-related quality of life in children living in HIV/AIDS-affected families in rural areas in Yunnan, China: Preliminary reliability and validity of the Chinese version of PedsQL 4.0 generic core scales. Journal of Acquired Immune Deficiency Syndromes, 53(Suppl 1), S111–S115.PubMed
14.
go back to reference Berkes, A., Pataki, I., Kiss, M., Kemény, C., Kardos, L., Varni, J. W., et al. (2010). Measuring health-related quality of life in Hungarian children with heart disease: Psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and the Cardiac Module. Health and Quality of Life Outcomes, 8, 14.PubMedCrossRef Berkes, A., Pataki, I., Kiss, M., Kemény, C., Kardos, L., Varni, J. W., et al. (2010). Measuring health-related quality of life in Hungarian children with heart disease: Psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and the Cardiac Module. Health and Quality of Life Outcomes, 8, 14.PubMedCrossRef
15.
go back to reference Majnemer, A., Shevell, M., Law, M., Poulin, C., & Rosenbaum, P. (2008). Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Quality of Life Research, 17, 1163–1171.PubMedCrossRef Majnemer, A., Shevell, M., Law, M., Poulin, C., & Rosenbaum, P. (2008). Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Quality of Life Research, 17, 1163–1171.PubMedCrossRef
16.
go back to reference Felder-Puig, R., Frey, E., Proksch, K., Varni, J. W., Gadner, H., & Topf, R. (2004). Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy. Quality of Life Research, 13(1), 223–234.PubMedCrossRef Felder-Puig, R., Frey, E., Proksch, K., Varni, J. W., Gadner, H., & Topf, R. (2004). Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy. Quality of Life Research, 13(1), 223–234.PubMedCrossRef
17.
go back to reference Hatt, S. R., Leske, D. A., & Holmes, J. M. (2010). Comparison of quality-of-life instruments in childhood intermittent exotropia. Journal of AAPOS, 14(3), 221–226.PubMedCrossRef Hatt, S. R., Leske, D. A., & Holmes, J. M. (2010). Comparison of quality-of-life instruments in childhood intermittent exotropia. Journal of AAPOS, 14(3), 221–226.PubMedCrossRef
18.
go back to reference Cremeens, J., Eiser, C., & Blades, M. (2006). Characteristics of health-related measures for children aged three to eight years: A review of the literature. Quality of Life Research, 15(4), 739–754.PubMedCrossRef Cremeens, J., Eiser, C., & Blades, M. (2006). Characteristics of health-related measures for children aged three to eight years: A review of the literature. Quality of Life Research, 15(4), 739–754.PubMedCrossRef
19.
go back to reference Upton, P., Lawford, J., & Eiser, C. (2008). Parent–child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 17(6), 895–913.PubMedCrossRef Upton, P., Lawford, J., & Eiser, C. (2008). Parent–child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 17(6), 895–913.PubMedCrossRef
20.
go back to reference McHorney, C. A., Ware, J. E., Jr, Lu, J. F., & Sherbourne, C. D. (1994). The MOS 36-item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Medical Care, 32(1), 40–66.PubMedCrossRef McHorney, C. A., Ware, J. E., Jr, Lu, J. F., & Sherbourne, C. D. (1994). The MOS 36-item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Medical Care, 32(1), 40–66.PubMedCrossRef
21.
go back to reference Streiner, D. L., & Norman, G. R. (1995). Health measurement scales: A practical guide to their development and use (2nd ed.). Oxford: Oxford University Press. Streiner, D. L., & Norman, G. R. (1995). Health measurement scales: A practical guide to their development and use (2nd ed.). Oxford: Oxford University Press.
22.
go back to reference Terwee, C. B., Bot, S. D., de Boer, M. R., van der Windt, D. A., Knol, D. L., Dekker, J., et al. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology, 60(1), 34–42.PubMedCrossRef Terwee, C. B., Bot, S. D., de Boer, M. R., van der Windt, D. A., Knol, D. L., Dekker, J., et al. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology, 60(1), 34–42.PubMedCrossRef
23.
go back to reference Bland, J. M., & Altman, D. G. (1986). Statistical methods for assessing agreement between two methods of clinical measurement. Lancet, 1, 307–310.PubMedCrossRef Bland, J. M., & Altman, D. G. (1986). Statistical methods for assessing agreement between two methods of clinical measurement. Lancet, 1, 307–310.PubMedCrossRef
24.
go back to reference Kulkarni, A. V., Cochrane, D. D., McNeely, P. D., & Shams, I. (2008). Comparing children’s and parents’ perspectives of health outcome in paediatric hydrocephalus. Developmental Medicine and Child Neurology, 50(8), 587–592.PubMedCrossRef Kulkarni, A. V., Cochrane, D. D., McNeely, P. D., & Shams, I. (2008). Comparing children’s and parents’ perspectives of health outcome in paediatric hydrocephalus. Developmental Medicine and Child Neurology, 50(8), 587–592.PubMedCrossRef
25.
go back to reference Matsumoto, H., Vitale, M. G., Hyman, J. E., & Roye, D. P. (2011). Can parents rate their children’s quality of life? Perspectives on pediatric orthopedic outcomes. Journal of Pediatric Orthopaedics B, 20(3), 184–190.CrossRef Matsumoto, H., Vitale, M. G., Hyman, J. E., & Roye, D. P. (2011). Can parents rate their children’s quality of life? Perspectives on pediatric orthopedic outcomes. Journal of Pediatric Orthopaedics B, 20(3), 184–190.CrossRef
26.
go back to reference Vance, Y. H., Morse, R. C., Jenney, M. E., & Eiser, C. (2001). Issues in measuring quality of life in childhood cancer: Measures, proxies, and parental mental health. Journal of Child Psychology and Psychiatry, 42(5), 661–667.PubMedCrossRef Vance, Y. H., Morse, R. C., Jenney, M. E., & Eiser, C. (2001). Issues in measuring quality of life in childhood cancer: Measures, proxies, and parental mental health. Journal of Child Psychology and Psychiatry, 42(5), 661–667.PubMedCrossRef
27.
go back to reference Waters, E., Stewart-Brown, S., & Fitzpatrick, R. (2003). Agreement between adolescent self-report and parent reports of health and well-being: Results of an epidemiological study. Child: Care, Health and Development, 29(6), 501–509.CrossRef Waters, E., Stewart-Brown, S., & Fitzpatrick, R. (2003). Agreement between adolescent self-report and parent reports of health and well-being: Results of an epidemiological study. Child: Care, Health and Development, 29(6), 501–509.CrossRef
Metagegevens
Titel
Use of the PedsQL in childhood intermittent exotropia: estimates of feasibility, internal consistency reliability and parent–child agreement
Auteurs
Deborah Buck
Michael P. Clarke
Christine Powell
Peter Tiffin
Robert F. Drewett
Publicatiedatum
01-05-2012
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 4/2012
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-011-9975-7

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